Positive Strategies

While 'discussion moved' discuses Huge issues like Individual choices vs the State, I would like to start a new thread where complementary therapies are accepted and supported as the best option to treat Itp. Some of us on Watch and Wait have only 2 options - Do nothing or try lifestyle changes and alternative/ intergrative therapies. Natural treatments should be supported on this forum as much as conventional treatments. They both have pros and cons but the bottom line is "we need them".
The Health Food industry has become huge because people are not prepared to just watch their health decline as they get older. I believe there is a parallel between health and platelets the problem is determining the definition of Health. This could be an interesting topic for another thread.
It would be great to encourage people to discuss positive lifestyle changes that have helped raise their platelets. Perhaps this might encourage some people to visit and post who might otherwise feel too nervous or stressed to do so.

Sally,

My 12 year old son has done watch and wait for the last 19 months; his counts for the last 6 months have been 20-40 ish. We've never really tried therapies, alternative or otherwise (barring a brief try with prednisolone), he just gets on with life more or less as normal. However, I've had a long time to try and correlate different things against his count, and the only things I've come up with are:

Positive - Autumn (no idea why), and viruses (odd, because I've seen other people posting on here saying that colds/flu send their counts plummeting)

Negative - Chlorine (couldn't swear to this one, but I think there is a slight connection between a lot of trips to the swimming pool and his count)

I am going to look at this thread with interest, because if there is something that works, and that is easy to try to add/eliminate from diet, I would try it. I am a bit sceptical that its that easy though.......

Good luck, Ali

I had a pretty good result from some chinese herbs recommended to "balance the immune system". They are called Rheumannia Complex, produced by an aussie company called Medi Herb. I bought them over the counter a couple of days after initial blood test/ diagnosis of low platelets and wbc's.

During this stressful period (approx. 3 weeks), while on these herbs my platelets went from 74,000 to 99,000.

I then started seeing a naturopath who put me on a pretty wild concoction (codonopsis, myhrr, calendular and berberry !) My platelets dropped to 69,000 in a month.

So I stopped taking her concoction and went back on the rheumannia complex. Platelets went up but only to 76,000. Whenever the platelets went up or down so to did the wbc's. Will use them again later if necessary.

I have an excellent relationship with my naturopath who sees her role as supporting me in my journey to better health. She also provides excellent advice on diet, liver detoxing and we are working together on the herbs. I may need some other opinions with herbs. She also loves doing muscle testing - neuro link- and has been muscle testing different herbs with me. I'm a healthy sceptic but enjoy muscle testing so we continue with this.

I am now trialling some herbs but have been delaying blood counts due to feeling my energy levels are a bit low after all the travelling etc. over the holiday period, all this RAIN (qld. aus.) and getting a cold. Will do them when energy levels feel 'normal'.

Alison - when I was first diagnosed and researching I did find mention of connections between chlorine and platelet issues! At the time I was swimming and I thought it might be related for me but when I stopped my counts weren't affected, so who knows - but anyway - apparently chlorine is on the list of things that affects some people's platelets.

Re autumn - less sun? Is Winter better too?
Erica

Sally,

There isn't a whole lot of difference between the counts you've mentioned - you can get that sort of variation (and more) without doing anything at all. I am not saying that your linking them isn't correct, but just that it could also be coincidence. Eating better is good for your overall health, so its got to be good. You might consider excluding food triggers as well as supplementing - there is a list of foods somewhere on this site that are supposed to lower platelets in some people, and I've read posts on the boards reporting some success with these. I hope you find something that really works for you anyway.

Erica,

When I think about it in that way, the autumn thing might be to do with more sun and not less. Dougie's good spells have followed our annual holidays which tend to be somewhere hot and sunny. We live in north England, so the sun isn't that strong here - there has just been a big campaign in Scotland about people needing to take Vit D supplements in the winter. So maybe vit D? - I might mention it to his haematologist the next time we go. It never gets him up to normal counts, but seems to help. Similarly, swimming free periods don't seem to raise his count much, but lots of swimming seems to lower it - to me anyway. As a parent, I find that the trouble with ITP is that there aren't any easy answers, and you always want to find one. Still, I live on in hope of discovering that magic key!!!!

Ali

Thanks Alison,
When you've reached the peak so to speak :lol: all positive counts are taken as just that. It is different from growing chidren and some adults.
I've pretty much eliminated foods which I think of as unhealthy, rather than triggers (alcohol, sugar, glutens, acid drinks etc.) This includes many but not all foods on the Warnings list. The ones on the list that I continue to take ie.garlic, ginger, tahini,fish oil, green tea etc. I take cautiously. Alcohol is obviously an 'allergy' for me - elevated gamma gt's. I gave it up after my first blood test but it takes time for the liver to detox so that is an issue I remain aware of when looking at my counts.

Has your son tried any significant diet trials?
I wonder about swimming. Does your son train throughout the year or just the warmer months?

The vit. D thing is huge. My ND told me a few years ago (as he looked at my horribly low Vit. D) - that anyone living in the northern hemisphere these days would do well to supplement. Even though my son's Vit. D was right mid-range, we did find that supplementing with 5000mg a day helped with his overall well being. When we checked him it didn't bring him anywhere near over the line so I know his body was using it up.

Well, this is the latest on Vitamin D, so I'd say the jury is out. However, I supplement with it myself since I want to protect my muscles and bones and my levels are very low. I'm just pointing it out so people can make an informed decision.


www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php

Thanks Sandi, Interesting article if you gloss over some of the technical terms. "90% of cells in the body are considered to be non-human" :woohoo: :whistle:

Ha - this is only one of many articles out there about Vitamin D. You can find a lot of them if you do a search.

Disagree completely with that article (since it is only a single article on the issue). My D levels were low long before my AI showed up and I improved the AI (pain) with supplementation. And bubba boy felt much better after the D was started. At this point, I trust the natural health community a bit more on its recommendations for D. What form of D a person takes is also important. And like all else, likely depends on the person and their body. Everyone is different.

There are many articles on that issue. I only posted one.

Here is some positive only info about vitamin D, brought to you by the Vitamin D council - I'm not kidding.
www.vitamindcouncil.org/researchAutoimmune.shtml


To me it seems the jury is still out and those with AI (like myself) should approach supplementation with a great deal of caution and consideration of the risks. I'm following the emerging research with great interest and an open mind as we learn more about how our complicated bodies work.
Erica

Woohoo! I like this forum! I'm totally rockin' the watch and wait thing. It makes my hematologist nervous... but I've been doing it for so long now, I think he's getting used to it. Heheheh.

But I was wondering... Yesterday I had a chat with a student who's going to a naturopathic college in AZ. She briefly mentioned a concoction of a few different supplements that can get platelets up (though I don't think it's permanent... only works while you're taking it kind of thing). Anyone heard of this?
The supplements/regiment are:

• Sesame Seed Oil Soft Gels - 2, 3 times a day
• Chlorocaps -2, 3 times a day
• Bio-Immunozyme Forte -1, 3 times a day
• Li-Zyme Forte - 3, 3 times a day
• Osteo-B II - 4 daily

I'm looking into it...still not sure about it. But my count's in the 20's.. and though I'm quite used to it now, I'd love for it to be just a little bit higher so I can go play in the snow!

Here is some positive only info about vitamin D, brought to you by the Vitamin D council - I'm not kidding.
www.vitamindcouncil.org/researchAutoimmune.shtml


erica,
the vitamin d council doesn't sell anything, so it really isn't comparable, for example, to the dairy council promoting milk. plus, its totally unreasonable to think vitamin is not 100 percent essential considering that the human body evolved a mechanism to convert sun light to vitamin d, i would think its pretty important for health.
so i much more trust that reason than the ama telling us to wear sunblock. i think nature knows better than the medical community that really has not "cured" anything yet.

Food for thought

I had an IGE blood test done to determine food sensitivities (naturopath) - almonds, all beans, all peppers, garlic, sesame, oyster, tuna, Egg white and yolk, Gluten and cows milk - I am OK with yoghurt and moderate cows milk cheese - basically I am OK with salads, vegetables, fish, meat and fruit am stay away from sauces - so I changed my diet to a rotation diet, excluded the sensitive foods and my platelets immediately went up (3 days) even while tapering off the prednisone - I have been stable at 85 for 6 months (touch wood!)- not great but better than my 30-50 count that I had for over a year - I take 5000 of Vitamin C, 2-5,000 of vitamin D, a probiotic, and milk thistle for liver

I enjoy wine and carry my own salad dressing and snacks with me, switched to sheep (pecorino) and goat milk cheeses with cheddar and mozzarella occasionally - I did have a couple of food incidents that I believe crashed my platelet count - Hummus and crackers (I dropped from 50 to 14 in 3 days and that was the only change I am aware of) - this has led me in the direction of managing diet - I go up when I am on vacation (more walking exercise, no work? and when my husband goes out of town (my diet only and less meat?))

I have, for myself, ignored all the diet and environmental factors of ITP though have carefully analysed that week my platelets drop, every time they do drop because the consultant always asks me if I done anything different that week.

Though last tuesday they dropped and had been drinking diet bitter lemon for the sharp taste in my dry mouth - and someone offered me ocean spray cranberry juice which I drink both of from time to time anyways. But last tuesday evening my platelets definately downhill as developed a bloodblister which had nearly gone next morning a couple of little bruises and had all the mild ache signs I have when they are going up. I didn't ring the hospital because it was only afterwards I realised they had dropped. I think they are back up again.

These products dont normally affect me as have had them other times but I do know they are listed. May be they affect me when recently had a platelet drop. May be sheer coincidence and a delayed reaction to reducing steroids each thursday at the moment.

I also understand mercury can be a source to avoid and in the summer I had scampi and that day they dropped and was tested by chance and discovered they were 37. Again I have had scampi before but not often and never decteted a drop before.

I made an early decision (1994) to stay of asprin because of it thining the blood but the rest I do have from time to time.

Am interested in the Vitamin D discussion and will read more about it along with vitamin K which is equally as important to us I think?

keh wrote: Food for thought

I had an IGE blood test done to determine food sensitivities (naturopath) - almonds, all beans, all peppers, garlic, sesame, oyster, tuna, Egg white and yolk, Gluten and cows milk - I am OK with yoghurt and moderate cows milk cheese - basically I am OK with salads, vegetables, fish, meat and fruit am stay away from sauces - so I changed my diet to a rotation diet, excluded the sensitive foods and my platelets immediately went up (3 days) even while tapering off the prednisone - I have been stable at 85 for 6 months (touch wood!)- not great but better than my 30-50 count that I had for over a year - I take 5000 of Vitamin C, 2-5,000 of vitamin D, a probiotic, and milk thistle for liver

I enjoy wine and carry my own salad dressing and snacks with me, switched to sheep (pecorino) and goat milk cheeses with cheddar and mozzarella occasionally - I did have a couple of food incidents that I believe crashed my platelet count - Hummus and crackers (I dropped from 50 to 14 in 3 days and that was the only change I am aware of) - this has led me in the direction of managing diet - I go up when I am on vacation (more walking exercise, no work? and when my husband goes out of town (my diet only and less meat?))

Keh - Guessing you did the ELISA? My son has (well, had) a LOT of food allergies. They begin from a damaged gut and a few have inherited tendencies (usually dairy). With most of the immune system being in the gut, when you manage food allergies (ie. avoidance and healing) then you really help the immune system. I now the few times my Bubba has had a reaction while having ITP his platelets tanked. I mean, like 100K tanked. As he's healed and we've been able to add foods back in he's done fine. We're down to three food allergies left out of about 40 and those are getting better, but they're not good enough yet to add back into his diet. Managing food allergies is a huge help to ITP. Even our old hemo acknowledged this one (rare for her!).

If you have kids (have no idea how old you are) look at dairy and gluten being inherited. Dairy is the biggie, but gluten is not far behind. Usually they inherit a parent's bad gut and then develop the allergy from there. Also, has your ND talked to you about using raw cow's milk? Sometimes (depending on the person), a person can handle raw cows milk because the good enzymes haven't been cooked out of it. Since you can handle some dairy, this might be a possibility for you. What I wouldn't give for a big glass of raw milk right now!! So looking forward to that day again!

Hi freckles,
Two of the main doctors for the vitamin d council are paid consultants for Vitamin D testing and supplementation companies. So people make money in all different ways off these things. I think we have to remain skeptical and weigh in the motivations while evaluating the research.
Erica

Just recieved my latest blood results. Platelets up but it seems my Vit D levels are low and here I am living in sunny Queensland (Australia).
I know there are issues with absorption so I was wondering if anyone knew of a good brand or method of taking it to increase it's effectiveness. Will do more research when I get time but just thought someone might have some advice to offer.
Sally

sally wrote: Just recieved my latest blood results. Platelets up but it seems my Vit D levels are low and here I am living in sunny Queensland (Australia).
I know there are issues with absorption so I was wondering if anyone knew of a good brand or method of taking it to increase it's effectiveness. Will do more research when I get time but just thought someone might have some advice to offer.
Sally

D3 is what your body needs (companies sell others but they are not absorbable). D is also made more absorbable with calcium and magnesium. A good mid-level test is 45.

Thanks Patti,
My level was 55 but the report said it is possible to have bone loss and functional vitamin deficiency at this range.
It wasn't a fasting test as I was not aware that it was necessary until the pathologist informed me that it is usually done fasting. Do you know what difference that can make?
Haven't spoken to my GP or naturopath about it yet and not sure what their take on this number will be.
All info greatly appreciated.
Sally

Most ND's (US anyway) say 45 is the minimum. But I know for my platelet boy he was 45 and we still supplemented him with 5K of D3. Especially because he didn't go outside this summer much (sun seemed to not be good for him at that moment). Even with supplementing when we tested him he was 75. I know he felt better with it. So it's not that you *can't* supplement if you're in the normal range. But you do want to test regularly (maybe every 3-4 months) to make sure you're not going too high. We just retested the boy's and his hasn't come back yet but I expect it to still be in the 70's, which is fine. We've never taken his fasting so don't know what that's all about.

Good luck. If you find a way, let me know. I've been on the high dose prescription (150,000 IU's) plus taking 8,000 daily and can't get my levels up. It was 18 last time I had it checked.

Sandi, do you take calcium/magnesium at the same time? It helps absorption. Ha! I was right down there with ya at 19. Haven't checked in awhile to see where I'm at. But I always take cal/mags at the same time with mine.

Hi all,
Finding this topic rather interesting - had a bone density scan last week, & seems I have early onset of osteoporosis of the spine
Yet to speak with Dr. but realize I should have investigated a lot earlier. I went through menopause early (42) & probably should have been on supplements. I think this has stirred me up as much as ITP - I have a lot of active living yet!
mj

Hi Meredith, Hey you active woman you, don't let it stir you up. I nursed many women and some men who had osteoporosis (some early onset) and it didn't seem to hold them back. With the right treatment you wouldn't know they had it and at least the treatment shouldn't effect itp, maybe even help it! And with one of the best things for osteoporosis being weight bearing exercises you should be ahead of the game.
We just need to get get to the beach more and do some more swimming huh?

meredithjane wrote: Hi all,
Finding this topic rather interesting - had a bone density scan last week, & seems I have early onset of osteoporosis of the spine
Yet to speak with Dr. but realize I should have investigated a lot earlier. I went through menopause early (42) & probably should have been on supplements. I think this has stirred me up as much as ITP - I have a lot of active living yet!
mj

Flouride is HORRIBLE for the bones so if you have flouridated water consider a Berkey filter with added flouride filter. Also try a xylitol toothpaste. It wouldn't hurt to add 1500mg of calcium/750 magnesium and D3 to a supplement regimine.

I did not know about Fluoride and bones. Off to read more about it.

With Aditi, I always found that when she brushes with fluoride toothpaste, her platelets drop!

I feel horrible about giving her fluoride water for the first three years. I thought I was doing a good thing:(

anuja wrote: I did not know about Fluoride and bones. Off to read more about it.

With Aditi, I always found that when she brushes with fluoride toothpaste, her platelets drop!

I feel horrible about giving her fluoride water for the first three years. I thought I was doing a good thing:(

Don't feel horrible. Just do your reading and then move forward. We beat ourselves up enough as parents but you know what you know, when you know it. We LOVE Xyliwhite Cinnamon toothpaste by NOW. I can buy it off the web for $2.99 a tube. Cheaper then regular store toothpaste.

patti